Happy New Year to all and hello as I am new to the group yet have been reading for a long while before I have finally plucked up the courage to ask for help.

I have had this condition for some 6 years although have only recently been diagnosed; I have been poked and proded, tested and re-tested for everything you could imagine.

My condition started where an epidural went catastrophically wrong and I immediately felt numbness and chronic pain since then have had a wide range of of nerve related pain, burning, intense bolts of pain that I cannot fully describe to another human being to give justice but I know as fellow suffers you will know exactly what I mean.

Complete numbness in toes, parts of feet, fingers, then where I had intense pain in other parts of my body the nerves burnt out and I have considerable numbness and patchy feeling in arms, legs, hands and left cheek.

I have noticed that I am getting the same pain and numbness creeping into other areas too.

I am concerned more so about my sudden jolts which wakes me at night and a spasm/cramping which takes over my legs and arms. I will go to stand up and cant and the it goes away and then comes back again and again. Especially bad in afternoon and evenings or on waking.

More recently I get a heavy weighty feeling in my limbs and wake up often where I cannot feel a leg or arm or hand.

Every day is different and I cannot predict what or how bad I will feel. I have had lots of good days over the years and made the most of it but those are getting less as the condition evolves (cant find another way of describing it).
Some days or hours I can do anything and appear to be perfectly 'normal' however several moments later or days later I am completely the opposite and cannot control the pain.

Stretching is difficult and can trigger pain and so if I keep still I am safeguarded from the hypersensitivity of the nerves burning.

Pain relief has been a nightmare as they have either given me things that make me feel very drowsy and out of it or theraputic methods like acupunture made it a lot worse and triggered all sorts of terrible nerve crawling pain.

I know my symptoms can be shocking (so apologies to any other new members) but I really need help so would be very grateful to hear of others who recognise the same and ask how you manage your pain/symptoms best or have any of you tried the statins or other methods recommended by the other help chat messages?

Huge thanks xx

P.S How do you describe to other people what you have got as when I try to tell people they almost turn the other cheek, people just dont register or ask again, its like a stigma of ignorance. If I had the very similar condition label of 'MS' I know people would in some way treat me differently as it is much better known and support is availaible. I feel so isolated with this, dont know how to get support for my home and for me and I would value your support.